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After reading all the posts on this site, its clear we need our own independent website, dedicated to the study and communication of all things hidradenitis. The specialists, doctors etc don't have a clue about this illness, so we have to find our own soloutions and way forward into the future. what im proposing is a site with all the tips and experience of other sufferers to create a \" guide \" for first time diagnosied children and adults alike, where we can cut through the mystery and years of experience associated with the condition. and get hold of all the information we need to progress with our lives, regardless of what level you may find yourself. There are so many issues and situations to consider ( phsyical \\ psychological ) but with as much information as we can get, we will be able to cross correlate and lay down some facts for future generations to access at the click of a mouse. all under one roof.
Im working on the layout now, and will keep everyone informed with the progress as we go ok !!!
I Empathise with everyone on this fourm and understand the situation and position we are all in. All communication is very welcome, all information, suggestions, questions etc, in fact anything at all, no matter what !!!
I hope this post finds you well and as pain free as possible, and if your going through the cycle, all our thoughts are with you, you are not alone !!! i look forward to talking with you all .
Peace, Love and Understanding !!!
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There is an excellent group on yahoo which groups many hs sufferers. If you search in yahoo groups for hs, it's called hs-uk. there is also one called HSgirltalk for females only but this group only has a few members.
One of the members of hs-uk has just started and registered the UK charity which will hopefully group together as many sufferers as possible and they have also created a website for the charity. The charity will do fundraising events, keep members up to date on latest research developments, offer advice and support, enable sufferers to share their experiences etc., so a good step forward in organising and supporting UK HS sufferers.
I also keep up to date with the French HS website (afrh.fr) which is really excellent in terms of set up, information, research, conferences etc., and when I see interesting articles on this site, I will translate and post onto the UK hs-uk yahoo group for all the members to read. The address of the charity website is: w w w.ba-hs.org. uk (without the extra spaces of course).
I hope you will all find this useful. It's nice to be able to chat to fellow sufferers who really understand what we go through with this insidious disease.
Love and blessings to all
there is also a BRILLIANT website called earthclinic.com which is full of real people's experiences, remedies etc. with a ton of really interesting information to read on HS and a host of other illnesses. If you look under \"ailments\", then go to the letter \"H\", you'll find hidradenitis suppurativa. There are dozens and dozens of posts from ppl all over the world. Obviously these posts are from non-medically qualified sufferers so not to be taken as gospel but there are some good tips and ways to make our lives easier and also some natural remedies that are worth a try.
love n blessings x
Thanks for all the links, i will check these out a.s.a.p. This could save me a lot of work. I havent mingled online for a few years, so im not really up to speed with the websites. I really don't talk too much about the condition, because of the lack of progress in the feild. I have tried pretty much all the suggestions and meds, although im always experimenting with my own ideas etc. At this point im about ready for my 46th operation, so i have a bit of experience and thought i might be able to calm some of the people about going into hospital and having these proceedures done. So the website idea was based on my experience from a while ago, there has been a bit of a push this last couple of years, with a few group tests i heard about in different countries. The tests were for a drug called infliximab, although i can't find results for any of these anywhere at all. It was a two year course of 12 proceedures, once every two months. I think it was expensive, maybe around 12,000 pounds for the two year course. The side affects were bad and i realised that the drug was an experiment with out any results published, so they wanted people to pay for the experiment themselves. I have never had that type of money anyway, but even if i did, it wasn't a proven cure. So if you have heard anything about these trials, i would be intrested to hear how they went. Appart from these trials i havent heard anything new floating around, but like i said, iv'e been ignoring my condition the best i can.
Thanks for the reply, i hope your feeling well.
thanks again Beverley !!
A COUPLE OF YEARS AGO I WAS ATTENDING NINEWELLS HOSPITAL TO BE ASSESSED FOR INFLIXIMAB, I WAS TOLD IT WAS ALSO A CURE, BUT MONEY WAS A PROBLEM. I WAS PUT ON SOME DRUGS THAT YOUR MENT TO TAKE BEFORE GOING ON INFLIXIMAB. I GOT THE LUNG X-RAYS DONE, AND WAS IN THE PROCESS OF SETTING THE EXPERIMENT UP. I HAD ONE OF THE WORST ATTACKS TO DATE, SO I WAS IN A BAD WAY AND AGREED TO THE CONDITIONS ETC. AS MY CONDITION GREW WORSE ( BEDRIDDEN FOR 4 MONTHS ) WHEN I RETURNED TO THE HOSPITAL, ALL THE TALK OF A CURE DISSAPPEARED AND WE WERE ONLY TALKING ABOUT ANTIBIOTICS AGAIN ??? SO I STARTED TO RESEARCH, TRYING TO FIND AN ( HS ) SUFFERER, WHO HAD TAKEN THIS DRUG AND WAS CURED. THATS WHEN I CAME ACROSS THE TRIALS THAT WERE GOING ON AT THE TIME. IT'S WAY PAST THE TIME FOR THE END RESULTS OF THESE TESTS, BUT I STILL CAN'T FIND ANY NEW INFORMATION ABOUT THE TRIALS. I LOST INTREST AND DECIDED TO GO FOR SOME ALTERNATIVES ETC. TO DATE IM STILL SEARCHING FOR ONE PERSON THAT HAS TAKEN INFLIXIMAB FOR THE FULL TWO YEARS AND BEEN CURED. IF YOU DECIDE TO CHECK THIS OUT AND HAPPEN TO COME ACROSS ANY INFORMATION ABOUT THIS, I WOULD SURE BE INTRESTED TO FIND OUT. I DON'T THINK I COULD TAKE IT ANYWAY, AS THE DRUGS YOU ARE PUT ON PREVIOUS TO THE MAIN INFLIXIMAB TWO YEAR PROGRAM, ARE TOO SEE IF YOUR SYSTEM CAN HANDLE IT. THE ONLY PERSON I HAVE EVER HEARD OF TAKING A FULL PROGRAM OF INFLIXIMAB, TOLD ME HE HAD TAKEN THIS MANY YEARS AGO ( 8 ). HE WAS ATTENDING A HARLEY STREET DOCTOR ( SO I TAKE IT MONEY WASN'T A PROBLEM ) HE SAID HE WAS ON TO SOME OTHER SET OF DRUGS TO DO WITH ANTI-LIVER REJECTION.
FOR THE LAST FEW YEARS I DECIDED TO STOP ALL DRUGS APPART FROM PAIN CONTROL, AND TO BE HONEST IM EXACTLY THE SAME AS IF I WAS POPPING PILLS. IM NOT GETTING ANY BETTER OR WORSE. SO IM GOING MY OWN WAY AS FAR AS EXPERIMENTATION IS CONCERENED AND HAVE A FEW IDEAS THAT I WOULD PUBLISH IF IT WORKS. IM GOING TO RESEARCH INFLIXIMAB AGAIN JUST INCASE THINGS HAVE IMPROVED, I WILL STILL SEARCH FOR THE TRIAL RESULTS UNTILL I FIND THEM. IF I FIND ANYTHING I WILL OBVIOUSLY TELL YOU STRAIGHT AWAY. SO TAKE CARE AND I HOPE TO HEAR FROM YOU AGAIN.
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